Can't escape the pain

It's been over a year since my surgery. I've halfheartedly started a few blog posts, but didn't get anywhere with them. In my experience, when I need to post the most is precisely when I don't post. That would continue to be true for the past 12 months.

Post-op a year ago everything was just ducky. Good recovery. Took lots of time to make sure I was strong before heading back to work. And then. Then the pain started in October, it increased through November and December and took a turn for the worse just before Christmas. Then I knew things were bad that even with pain meds - Tramadol for the most part - I was waking up with pain in the night, and was looking forward to my 4 hour window so I could take another dose. Then I graduated to Dilauded and have been there ever since. 

I'm highly uncomfortable with taking narcotics every 4 hours just to function, and that doesn't even manage all of the pain. I've re-upped my medicinal marijuana prescription and need to order some more with the hopes that if I can reduce some of my narcotic use, that will allow me some pain relief and lessen the discomfort I feel every time pain meds.

I consulted my surgeon in December, got x-rays and a CT scan and nothing turned up to explain the source of the pain. 

I sought a second opinion in March at the Hand and Upper Limb clinic at St. Joseph's hospital in London, ON (the not exciting London). The doctor had some good ideas about specific nerves and damage to them, but in the end, after trying a few options with no results I had a come to Jesus moment about my health and pursuit of a source to my shoulder pain. I just couldn't journey down the path any longer. I just didn't have the energy anymore to find the source of the pain. My fight was over. 

I talked to my shoulder doc about one last biopsy to ensure there was no infection and then hanging up the gloves. He agreed. Results showed no infection. I asked for a referral to pain management clinic and I'm now on the waiting list. Still taking my dilauded every 4 hours, still in pain. Still in a shitty mood due to the pain more often than I'd like to be.

If you'd told me 10 years ago I'd be here, I would never, ever have believed it. It's been a death by a thousand cuts, I'm the frog in the boiling water, it's the slow and sure diminishing of my spirit.

I spent all of my spoons on Friday (and tapped into much of Saturday's supply) going to City Folk music festival here in Ottawa. A couple of my favourite bands from university were playing and I was determined to make it through. I jacked myself up on some extra steroids, put on my comfy shoes and headed out to see Live, Bush and Our Lady Peace. While OLP  didn't play Thief, I re-discovered the song while I was listening to their music in the week leading up to the concert. They talk about a thief living inside of someone's head, it's based on a young girl with a brain tumor, and the thief stealing her life away. You can see why this song spoke to me. RA is taking more and more away from me, and I don't really have a good plan to get any of it back.

Correlation of Tea Consumption to Pain Experienced = 100%

With surgery 3 days away, I've got a lot on my mind these past few weeks. Wrapping up at work, getting things organized at home, getting through my nesting urges and navigating the usual pre-surgery emotional roller coaster that seems to come every time. 

To add to the list, my shoulder is now declaring itself done, and my pain has increased noticably. so much, that I am Googling pain scales to accurate encapsulate how much it hurts. I'm putting my pain at a solid 5 right now with some days at 4 and others at 6. 

I've been providing a pain number at rheumatology, neurology and orthopedic appointments for years.  They ask you to provide a number between 1 and 10 rating your pain, without any cues or clues as to what constitutes a 1 or a 10. And I think I've been doing it all wrong all along, and under-rating my pain.

I can clearly recall my 9. It was a few surgeries back, and they had taken bone from my hip to graft to my shoulder. For that surgery, I didn't want a nerve block (too many past issues), so I was at the mercy of the IV pain meds they were pumping into me. My pain reached the "worst possible pain you can imagine" and since then I've adjusted my pain scale and compared everything since then to those few awful hours in recovery as my pain was out of control. 

To address my increased pain, I spoke with my rheumatologist and she provided me a prescription for Dilaudid as the Tramadol and Tylenol 1's were not sufficiently addressing my pain, and I still had 3 weeks to go until surgery. The Dilaudid is helping my pain, however my emotional state is a whole other matter.

One of my coping mechanisms has been to drink more tea. It seems the correlation between increased pain and tea consumption is 100%. There is something soothing about tea that calms me, provides some caffeine and forces me to slow down for a few minutes and regroup. This simple exercise is one of the several non-medical ways I try and manage my pain. I've also been working from home in the afternoon for the past several weeks, which allows me to lie down for 20 minutes to rest. Plus the added comfort of being at home, in comfy clothes hanging out with my puppy provides some measure of soothing to my frayed body and emotional state.

I've been listening to playlists from Google Play. A lot of comfort music, which can be categorized as Alternative Hits from the 90s. I came across OAR's "Shattered" and it seemed appropriate for my current state.

Nothing to say

Odd to start a blog with saying that I don’t have anything to say. I have lots to say, I’ve just said it all before and don’t want to say it again.

I’m having another shoulder surgery. There, I said it.

As it turns out, there is space around the base plate of my socket on my right shoulder, and is likely moving, causing me pain. The good news, is that there is a source of my pain and it is mechanical, therefore – theoretically - fixable. I’m a bit a cynic when it comes to my expected surgical outcomes. Surgery hasn’t always gone according to plan.

Nerve damage. Inability to move my arm. Infection. Failed surgery. Increased pain. Loss of range of motion. Just to name a few.

They will take bone from my hip and move it into my shoulder to build up the bone stock. And then put me back together. A few surgeries back I had bone removed from my right hip. The pain from my hip was almost as bad as the shoulder, and quite memorable in the intensity and duration. Post-op I had a cane and a sling.  I was quite the sight and it was a really rough recovery.

In weighing out the risks versus benefits of tackling another surgery, the counterbalance is pain. I can’t continue to live with the pain that I have right now. I’m not interested in this level of pain for an indefinite period of time. My shoulder will not magically get better on it’s own – I know that for sure. That leave my choices at pain or surgery.

I’m picking surgery because I still have hope. I still believe there is a better shoulder out there for me, hopefully one that lasts more than 2.5 years. I thought I’d found it in 2015, but it seems there is another fork in my road, and I have another surgery to go. I’m only 42. I can’t give up yet, and – more importantly – it’s not in my nature to give up. I can be quite tenacious and headstrong, and with my RA, this seems to be serving me well.

A fragment of a lyric was stuck in my head, and I managed to work it out the song and the band. My taste in music is quite diverse, and it include some a fantastic punk bands called Green Day. Before you don’t follow the link as you are not interested in having your ears blown out, this is one of their more mellow tracks – Good Riddance. I’m at another fork in my road and hopefully I’ll find a better path ahead.

Sheer will is not enough

Have I ever really acknowledged that I'm sick? That my ability to move through life is any different than the "average" person. No, not really. I've just barreled through life assuming I could keep going - often out of sheer will. But the fatigue of 26+ years in this battle is taking over, and sheer will is failing me.

For the first time I can recall, I'm going on a business trip and not extending it by at least a day to see the local sights. I'm off to our Reading, UK office, which is about an hour train ride from London. And I didn't book an extra day to wander around, as I'm utterly exhausted from the pain in both my feet and my shoulder, and the thought of expending that kind of energy is too overwhelming for me right now.

This feels like a tipping point for me. Usually I'll just try my best, dope myself up with appropriate medication, and give it a go. This time I gave up before I tried. I'm really tired from trying and trying and trying to have a "normal" life, which I define as a life where I can do everything I want.

My colleague was describing my latest surgery adventure to her husband, and she kept describing me as having lots of hutzpah. I like that word. It says to me that there is a certain amount of spunk and determination.

I feel my determination slipping away, as it is no longer enough. I may have finally realized that I'm not like everyone else, I can't just do everything I want and I am starting to take my disease more substantially into consideration when making plans. And the scary thing - to me - is that I'm no longer angry. I'm just sad. And resigned and seem to have lost my fight a little. I'm overwhelmed by my life right now, and extra energy to put on a good front or push ahead is simply not available.

The first song that came to mind was "Bulletproof" by La Roux. Perhaps next time I can be bulletproof and do whatever the hell I want without accounting for my RA.

I hope you feel better tomorrow, mom

It's been a bit of an uphill battle since my surgery 10 days ago. The pain is not really subsiding, I'm certainly worse off than I was pre-surgery and this has been a tougher than expected recovery. I've had some weird side effects that I'm still sorting through - several of which make me think that I really do have an infection. Monday - when I receive my results - can't come too soon.

This is all substantially easier to manage than the emotional "hope you feel better" comments I'm getting from my kids. They don't know what to say, they want me to feel better, and this is their best way to express their concern and genuine hope that I will feel better.

If I've never said it before, let me be clear, I have awesome kids. They are kind, witty, smart and compassionate. Chelsea is 10 now, and I had my first shoulder replacement when she was 2 and Patrick was 4. They've only ever known me in and out of shoulder surgery. The questions and answers have changed over the years, and I've been honest with them as best I can without scaring them. Kids need to know parents are both human and superheroes at the same time. I can be sick, but I will duel to the end with my arch enemy (RA) and I will win. Kids need to know that, they need the reassurance of our permanence.

Tonight I was watching a movie with Chelsea, and she asked how I was (I looked a little slumped and in pain, which I am) and I said I was just ok. She then commented that I'd had a big day and it made sense I didn't feel good. She knows that me overdoing it equates to pain and fatigue - not really in those words, but the concept is there.

How do I tell them that I will never get better tomorrow? I may feel better, but that my health trajectory is likely heading downwards, not upwards. Not to be negative or hopeless, but I have a chronic condition that does not currently have a cure. I've been in a steady decline of my health in the past few years between the surgeries, failed medications and increased pain. My "tomorrow" does not appear to be any day soon.

I was listening to sad acoustic covers (that is actually a playlist on Google Play) and came across "Lean On" which is normally a dance track, but I liked this acoustic cover. And until I feel better, I'm glad I have them to lean on.

It all comes down to expectations

This picture perfectly sums up my recovery thus far from my shoulder biopsy. Given it's my 10th shoulder surgery,  you'd think I would know better. It seems I don't. I'm struggling a week post-op thinking I should be doing and feeling better than I am. And through a very frustrating past couple of days, I've realized that it's my expectations that are the problem, not necessarily my recovery. 

I feel there are things that I gloss over because I've been through so many surgeries. If this had been my first surgery, I would have had lists and lists of questions and would have been very academically prepared with information. Since this is the 4th time I've had this specific procedure, I walked in with experience, but very little academic information. 

I somehow didn't remember that I had to have my football-player type shoulder pad bandage on for 5 days before I could remove it and have a shower. I never really asked how long I should be off work. I know it varies by person and their job and their pain level. Somehow I expected that I would be ok to work on Tuesday, a mere 6 days post-op. Reflecting back, I'm not sure what the hell I was thinking. I didn't go to work yesterday, I worked from home. It went ok. And then I took my ok-feeling arm for a spin and cooked dinner and did a load of laundry. That did not go ok, so I rested. 

Today, I went to work and was in a reasonably distracting amount of pain at 7:30 am sitting at my desk realizing that it was a pretty big mistake to be there. I stayed for a meeting and left, working from home this afternoon. I consider myself a fairly smart person, but I seem to be making some pretty dumb assumptions  and decisions about my recovery. 

I think this morning was a pretty clear wake up call for me. There was no reason for me to be in that much pain, sitting at my desk and trying to work. It was completely avoidable and unnecessary. The only person who expected me to be there was me. Had I only listened to my body and not felt like I could/should breeze through my recovery, I may have actually prevented myself some pain and frustration.  

All of this is taking a bigger mental toll than it otherwise needs to. I'm upset. Frustrated. Short-tempered. Tired. Discouraged. Sad. Oh, and in pain, of course.

This song might be a bit dramatic as a reaction to today's insights, but it's one of my brother's favourites as far as I know, and it's aptly titled "Hurt". This version is by Johnny Cash and it's a cover of Nine Inch Nail's song. It's about living with the choices we've made, regretting some that we didn't. Today didn't represent some of my best choices, but I get another chance tomorrow.

It's just a little surgery

Is any surgery a "little" surgery? Is it fair to say it's "just" day surgery? Have my expectations for what a "real" is surgery risen so high that my upcoming surgery will escape my notice?

No. No and No.

There are no little surgeries. Each surgery is an event unto itself with various emotions, pain, problems and potential outcomes. While my surgery on February 14th is a day surgery, I feel the weight of it, in particular as the date draws nearer. I'm moving into familiar pre-surgery emotions and routines. I'm sleeping poorly, I'm stressed, I'm trying to tie off everything at work, I'm emotional, I'm sad and I'm feeling pretty fragile overall.

In the past couple of weeks my pain has increased to a point where pain meds are starting at 10 am not mid-late afternoon and there are multiple doses in a day. I'm woken up by pain in my shoulder and I think I can feel the joint may be slightly warmer than the surrounding area. All this to say, I'm mentally preparing myself for there to be an infection, even though this is possibly the worst outcome.

I’ve been listening to some of my favourite music from the 90s lately; it’s a source of comfort.  Specifically, I’m back to listening to a long-standing Canadian rock band 54-40. They put out an album in 2016 of their greatest hits re-imagined. I love it.  In particular, their newest version of “Lies to me”.  The lyrics open with “What is wrong with me, am I supposed to be happy all the time?” That is a good summary of my current state.

Strategic Detachment

I talked about this concept with my late friend Jon Penner from work. He was in the military for many years before moving to a career as IT professional and a civilian life. We met through work, I was his HR Advisor. We just seemed to hit it off despite our very different backgrounds.

We talked about detachment the sense of consciously removing the emotional reactions from a situation to deal with the cold, hard reality. His was cancer, and he was trying to make preparations to go through his first round of chemo. Mine was my 5th or 6th shoulder surgery, and trying to cope with emotional turmoil that accompanied it.

I seem to be deploying a similar tactic for surgery #10. I've had pain in my shoulder for the past 4-5 months, and after two consultations with my surgeon and one with my neurologist, and no real ideas on the source of the pain, I'm having an(other) arthroscopic biopsy on February 14th to take samples and see if there is an infection. I'm not even sure what outcome I'm rooting for.

Door #1 holds at least two more surgeries with three months off work for each, a PIC line with IV antibiotics for weeks and the very real possibility that they may not be able to put me back together again.

Door #2 holds pain with no real source and no real path to determine the source. My surgeon looked stumped, and that's not a good thing. I see many more months of poorly contained pain and the possibility that the source may be ultimately elusive. And where does that leave me?

Neither of these options is particularly appealing. 

I've tried to tell myself I'm dealing with this well by taking it one step at a time, and not looking too far into the future. But I don't think I'm fooling anyone. I'm just putting off the avalanche of anger, frustration and fear that is coming. I can't plan any further than the end of February. That March break trip we were going to take? Nope, on hold. That business trip to our London, UK office? Nope, unknown if I'm going. 

My RA is not well controlled right now. My pain is not well controlled. My emotions are not surfacing. This can only spell trouble for someone as emotional as I am. There is most likely a shit storm of emotional upheaval in the making and I'm not looking forward to it surfacing. I've not even cried about the fact I'm having another surgery. I'ts like it was inevitable and I'm accepting it. I've detached myself from the upcoming surgery as a survival mechanism.

I've been listening to melancholy music to match my mood. This time it's Blue Rodeo and one of their classics from the 90s "Till I am Myself Again". I'm not feeling myself these days, but I know as the surgery date comes closer I'm sure this detachment will fade away and I'll be back to myself.

Feeling a little lesser

It's hard to describe that slow slide into old habits. You just start behaving differently and within a few days, a week, a couple of weeks, it's the new normal. Only after some pause and reflection that you realize this is not how your life was a month or two ago.

I was back at Module "O" at the General Hospital here in Ottawa yesterday. I reluctantly made the appointment to see my shoulder surgeon, and trudged off at the appointed time this afternoon. In making and attending this appointment, it was an acknowledgement that the pain in my shoulder was a) real, b) substantial enough to do something about, and c) something I need help with. 

I really like my surgeon. We have a good relationship, as well we might after nine surgeries together. We had a good discussion about how long this has been going on (6-7 weeks), what kind of pain is it (throbbing, sandpaper-y), when am I experiencing pain (it seems to be escalating, as in it is starting to become more prominent earlier in the day and sticks around until bedtime), what I've been doing (mostly pain meds and less activity) and what do to next (here comes the crappy part).

Neither of us is super keen to open up my joint. For those of you just joining my blog, I've had two infections on past shoulder surgeries and I'm not keep to open up my joint to the possibility of another one. My x-rays showed the hardware looks good, and seems to be solidly in place. Given I've only had pain for the past 6-7 weeks, a wait-and-see approach is not a bad option. I'm on pain meds daily - the variety, frequency and quantity change daily. I have some good days, and some bad days. No real causation that I can determine between my good days and bad days, my activity and my meds. 

The downside of wait-and-see is that I'm in pain, daily. I will see him again in mid-January to see how things are going. 

I'm trying very hard not to panic. I'm trying to wait and see what happens. I'm trying. But the possibility of more shoulder issues, and the slim chance of another surgery is devastating. And I've had more than a few tears this week as I try and look to the future and see where all of this is heading. 

I have - however - started to drive more one handed as my right shoulder is sore. I've started to favour my left arm. I'm exhausted from the pain, so I've started to lie down when I get home from work. I'm just doing less, and feeling lesser. Normally I can pull off being "normal". That seems to be harder to do these days, and I'm less interested in trying. It just takes too much damn effort.

The National is one of my favourite bands. They have a new album out and a tour all over North America, hitting Montreal in December and I'll be going. Empire Line is one of the new songs, and the hypnotic beat and repetitive chorus reminds me to keep my chin up, I'm sure I can find a way.

Not Good

I was listening to my favourite podcast a few days ago, the "Ongoing History of New Music" hosted by Allan Cross. I've been listening to this show on and off for over 30 years. The episode was a tribute to Gord Downie of the band the Tragically Hip, who passed away in October. In the episode, there were snippets and quotes from Gord directly, and one struck a chord too close to home and I started to tear up immediately.

"Humour comes from these bare, bottom of the barrel moments that would crush people, even if they knew they happen to you. You help each other through these things. You forget them because the brain tells you to forget them. You have to artificially resuscitate memories like these."

Two parts resonated with me.

First, using humour to get through moments that would crush me. The sheer number of surgeries, pills, pain and tears of the past 26 years could have easily crushed me. I use humour and a positive attitude to get through my RA stuggles. 

Second, the idea that you need to forget some of your experiences to keep moving ahead, that they are buried deep in your mind as a form of self-preservation. You can't have them at the forefront, the pain is too great.

Looking ahead, I don't know if there are enough laughs to pull me through. I've been having increasing pain in my right shoulder (yes the one that has endured eight surgeries since 2011) and I'm terrified. I started in denial. Work was insanely busy in October and very stressful. I blamed the pain and discomfort on stress. It's now several weeks past the stressful time, and the pain is there, and cropping up at rest. For those in the know, pain at rest is not good. For anyone. Ever.

As I type this, I'm waiting for my rheumatologist to appear in the consult room. I'm going to start by talking to him, but I know the real next step is a trip to my shoulder surgeon. I'm trying to put my utter panic on hold until I have further information. It's not going well.

The Hip are still on my mind, given the passing of their lead singer. While the content of this song is not necessarily relevant to my post, the mood, the melancholy feeling and chorus resonate with me. "Long Time Running" describes my relationship with RA and reminds me it's not ending anytime soon.

Spending Spoons like a Drunken Sailor

For most of us in the auto-immune world, the Spoon Theory is the language we use to communicate our energy levels and how exhausting it can be to have a chronic disease. I've not used it much, but it's a powerful metaphor for how we get through a day and try and allocate our energy.

I've been on a new biologic, Xeljanz, for the past three months. I've also started back on Leflunomide  around the same time and am still taking the ever-present steroids. And throw in some form of pain meds as and when needed - more often than I'd like, but a girl's gotta live.

I'm approaching this blog entry slowly, tip toeing up to the topic, not wanting to disturb anything. Because I may actually have some energy back. Maybe. I may be taking less pain meds. I may not have super swollen feet 24/7 that are hard to walk on. I may actually be feeling a bit better. Possibly. But shhh. Don't tell anyone so I'm not jinxed.

So, of course, I'm spending spoons like a drunken sailor!

Why not? I've been feeling pretty crappy for - frankly - several years and this is the first time in recent memory that I don't have to meter out my energy worried about how I'm going to make it through the day. I can make it to the end of the day, and still have some spoons left. It's like I'm almost a normal person. Almost.

But I'm an over-doer. I try and cram too much in. And I'm paying for it this week. Work has been busy with lots of stress, long hours and weekends, with no real relief in sight. Home is busy with hockey time two, competitive swim schedule, dance, homework and trying to feed everyone and ensure that they are in the right place at the right time with the right equipment (trickier than you think!). However - I'm not as bad as I've been in the past under similar circumstances. Again, don't tell my body that. I'd hate for it to revert back to it's usual state of flare.

As every good Canadian knows, Gord Downie, lead singer of the band the Tragically Hip, passed away last week. The Hip were an integral part of my musical life since high school. His poetry, expressed through song, provided support, meaning and insight at various points in my life.

One song that stands out in light of this post is "Firework". It's my go-to Hip feel better song (apologies for the language). It's about how temporary things can be - they can last as long as a firework. I'm hoping upgraded spoon allotment is more permanent.

The reason I write

Oh, it's been a while. Like a year and a half. I've been busy being a mom, full time HR guru, Parent Council President, hockey mom, swimming mom and working through all this with a very flare-y arthritis-ridden body. It's been a roller coaster of flares, prednisone (up to 50 mg per day!) and failing out of 3 biologics. Goddamit. I'm crying just writing this. 

I'm trying a new style of writing with this re-invigoration of my blog - less editing, more stream of conscientious, more raw honesty. We'll see how this goes. 

We had some people over on Saturday - hockey team parents - for a get to know you gathering. Nice people, good event. We talked about kids, work, hockey and then started discussing where we went to school and what we studied. I have a writing degree and someone asked if I write outside of work. Well, I offered up that I had kept a blog chronicling my RA journey. 

One of the ladies eyes lit up at the mention of Rheumatoid Arthritis and launched right into all the diet changes she's made that have taken her off all her meds and now she has no symptoms for her Psoriatic Arthritis. I commented that I had tried that path with limited success. She pursued the conversation.

Sigh.

I tried to find my grace as a host and a human being, but I’m sure a trace amount of annoyance came through as I felt needed to defend my health choices to a total stranger, in my house, in front of my guests. I used words like “nine shoulder surgeries” and “severe rheumatoid arthritis” and “26 years”, but no – apparently diet changes and going gluten-free are going to solve all of my problems and get me off all of my meds. 

This is why – for years – I didn’t tell people about my RA, didn't write about it, didn't Facebook it. Nothing. Nada. I don’t have the energy or patience to educate or explain my disease to strangers who really don’t get it. Nor should I feel the need to defend my health choices to complete strangers. But I did feel the need to defend my choices. This conversation upset me so much, I’m back at the keyboard looking for some therapy.

I have tried alternative and traditional therapies, diet changes, supplements, acupuncture, laser therapy, massage therapy, a complete elimination of all grains and dairy – all with minimal to no success. The effort required was not worth the minuscule improvements I saw in my health. And - frankly - it's none of anyone's business how I approach my health.  

It's four days later and I'm still frustrated by how much this has gotten under my skin. One of my favourite songs from the past year has been "Float On" by Modest Mouse. It's about moving on despite setbacks you might have. That's me. Trying to float on with my RA. 

Love is.

Love is best expressed in silent actions than flowery words.  In the past 15 months I’ve had 5 surgeries which included 3 total shoulder replacements. I’m aware the math doesn’t work – since I only have 2 shoulders. Needless to say, it’s been a hard year. While I’ve written many posts on what RA has taken, with the right perspective, you can see beauty in what people give when you need them.

Chronic disease is hard on a marriage. 8 surgeries in 6 years is like throwing kerosene on a fire, if things were bad before, they are only getting worse.  Imagine your spouse tomorrow tied their right arm behind their back for 6 weeks and you have two active children aged 9 and 11 years old. It’s like adding one-third the work to your day and reducing your help by 50%, but throw in some free babysitting. Irritation on both ends is a strong possibility, as are high emotions from the frustration. It’s not always pretty. But I think if you ask John, he would say our marriage is stronger for going through this together. He’s picked up some skills along the way. He can now expertly put my long, curly hair into a bun or a  ponytail and we were just getting to braids (ok, kidding on the last one). He can hook up an IV to a PICC line. He is an expert a pillow “nests” for my shoulder. He’s my arms and hands when they don’t work and hold me up when the world seems to be falling around me.

My parents set an example for the kind of parent I aspire to be. In December 2014 they moved to Ottawa to be closer to me and my family. They recognized that I would need more support in the years ahead, given my declining health. Their actions show true love – parenting is leading by example, and they have set high bar for me to follow.

My friends are a mix of “new” and old. I have very good girlfriends from 20 years ago at university and friends that I’ve met through my professional life and the moms of my kids’ best friends. They all support in different ways – taking me for groceries, running errands, coming over for a visit, feeding my Starbucks Chai latte habit and sometimes just listening to the apparent never-ending story of my RA struggles.

My RA journey isn’t solitary; it involves people in my life. My husband, parents, kids, friends, colleagues. I’ve been on a Death Cab for Cutie (yes, that’s a band name) binge lately. Their song “What Sarah said” is a haunting story of the despair of the hospital which puts into sharp focus who is important in your life, with the pivotal observation: “Love is watching someone die”. I have found throughout my RA and most recent surgery journey, that I am surrounded by love and friendship.  For that, I am grateful.

All Flared Up

Oh, it’s been a while since I've posted. That usually means lots has happened and I’m still processing. I'm just getting back to work full time since my reverse shoulder replacement in November. Yes, you read that correctly. They took my shoulder joint, reversed the polarity and sewed me back up.  Yes, they can do that. Yes, it really works.

Brief history lesson. I've had eight shoulder surgeries in six years, and seven of the surgeries were on my right side. Back in October 2014 I had shoulder surgery #3, had screws removed in March 2015 and found the joint was infected. Removed that joint, put in a spacer in April 2015. October 2015 saw an arthroscopic surgery to determine there was no infection. November 2015 I had a total reverse shoulder replacement. Oh, and another infection. Cue another round of IV antibiotics followed by four months (and counting) of oral antibiotics.

I'm flaring. Again. Flaring for me means my joints are swollen for most of the day, I have stiffness for a few hours each morning, and I'm in a notable amount of pain – which means more than my usual baseline amount of pain.

It seems to be a pattern in the past year. Have a major joint surgery, take 6-10 weeks off work, go back to work and flare. This time it’s much less well controlled, I'm on 40 mg of prednisone – the most I’ve ever been on - and I might as well be taking tic-tacs for all the benefit I’m feeling. At least with the tic tacs I’d have great breath and wouldn't be gaining so much weight.  This is my 5^th flare in about 15 months, and I've also had 3 major and 2 minor shoulder surgeries in this time. Coincidence? I think not.

I counted my daily meds – I'm on the highest pill count I can recall. I’m at about 24. And that’s not even keeping all the pain and inflammation at bay.  If I ever get around to writing a book or a more significant, publishable article about my RA, the title will be “Pain is not my biggest problem”. I can manage pain. I can take the pills. I can breathe, rest and modify my activities . It’s the fatigue that gets me, trying to get through a day with some amount of grace and humour, yearning for rest so that I can try again tomorrow with a glimmer of hope that it might be better. It’s the red, angry inflamed fingers staring back at me from the keyboard and the never-ending fear that these uncontrolled flares are causing permanent damage resulting in a lesser future for me – less than I already expect.

RA is a terrible, terrible disease. I’ve been on the RA path for 25 years now. I’m a veteran. I know there are elements of my disease that are in my control, and some that are not. But the fear never leaves me. If my surgery count is 8 at 40, what does 50 look like? 60?

As I’m trying to stay positive, I’ve been listening to some of my favourite songs from university days. James’ “Sit Down” came on a while ago, and it’s the first time I really listened to the song for the message. An amazingly upbeat song about supporting those who are depressed, lonely or outcast. I somehow seem to be amazingly upbeat given the (at times) depressing circumstances of my health.

Material Girl

No amount of vacations, jewelry or distraction are going to take away my disease. No magic combination of words will explain away my disease. No pill, treatment, medication, food or drink will eliminate my disease.

For the past 6 years I’ve been gearing up for, or recovering from shoulder surgery. To ease these disruptive and painful events in my life, I’ve received small charms, diamond earrings and rings. We’ve gone to Venice, Munich, Maine, PEI (twice!) and Disney (twice!). These were great trips and family memories and beautiful jewelry. In the end, I’ve still had 6 shoulder surgeries, #7 is tomorrow.

The fight might be delayed, dressed up or postponed – but it’s waiting for me after every holiday and glittering bit of jewelry. You can’t buy your way out of Rheumatoid Arthritis. You can’t buy your way out of my shoulder hell. This is the harsh reality of my life. It’s my fight, and nothing can take it away from me or make it better. It’s up to me. 

And I’m really tired. Utterly exhausted from the pain, the stress, the pressure to fit things in before my next surgery, the scheduling, the explanations, the sad eyes, people feeling sorry for me, the “you’re so young”. 

There is no easy way out of this disease and my surgeries. It’s a tough slog and there are no shortcuts. The only way I’m going to feel “better” about this is how I wrap my head around it. My attitude towards my surgeries has matured in time. At first, there was a certain amount of novelty. I’ve moved from passionately talking about the cool things surgeons can do to re-build my shoulder and public education on my disease to artfully dodging the “how is your shoulder” question that invariably comes up in conversation. 

I understand, it’s hard not to ask me when given my past 6 years. Almost every conversation has been “how’s your shoulder?”. People genuinely care, and just want me to be better. What they fail to understand, is that there is no “better” and I’m aiming to simply not get worse. At this point, I don’t want to educate or talk about the next scientifically advanced cool surgery I’m about to have. I just don’t want to talk about it period. I now view it as a giant pain in the ass, and I just want to get on with it. “Keep Calm and Carry On” and all that.

As a nod to one of the first albums I ever purchased, I’ve been a Madonna fan on and off for 30+ years and Material Girl just seemed to fit this post. While no amount of trinkets or trips will take away my disease, the happy memories I take from them are what makes my life wonderful. I have a good life, even if there are a few more bumps in my road than most.

Just another date in the calendar

When does surgery become routine that it is just another appointment in the calendar? When it is so commonplace that there is no more fanfare, anxiety, special preparations or lost sleep? When you almost dread telling anyone about the surgery as you are exhausted more from the re-telling and outpouring of sympathy almost than from the pain of the disease?

I think I’ve reached that spot. I’m heading into surgery #7, #6 on my right side and #4 for the past year. These are terrible stats, and they are going downhill.

At my recent appointment with my shoulder surgeon I didn’t happily sign off on surgery that might have brought some closure on the shoulder saga. Oh, no. I found out the results from my shoulder biopsy in August weren’t entirely conclusive. The majority of the results showed the same staph infection from this past Spring, and the minority came back negative. I’m also primarily asymptomatic – no fever, no chills, no pain. Well, about that last one. I have some pain, not the same level as last Spring, but it seems to be creeping back in. This is not good.

I cannot have my proper shoulder hardware re-installed until I’ve been completely cleared of infection. The  shoulder biopsy completed by drawing tissue and cell samples with needles couldn’t definitively determine if I have an infection. This can all be solved with another surgery, of course. Which is scheduled for October 6^th. Don’t celebrate just yet, this in no way replaces the next “big” surgery, I’m adding to the surgical list, not substituting or reducing. This surgery will get deeper tissue samples as I’ll be knocked out and they are going in arthroscopically. Hopefully better samples equal a definitive infection decision.

After they cook up the samples in the lab, there is complicated decision tree that follows. If I have an infection, how are we treating it? If there is no infection, where did the positive results come from?

And the question I really want answered – when the hell do I get off the merry-go-round and get my hardware back and be done with all of this?

I went to the appointment myself, I wasn’t expecting this conversation and turn of events. When I suspect bad news is forthcoming, John comes for support, but I walked in unaware. I was expecting to sign up and get my hardware back and to be done.  In the end, I did sign up for a surgery, but not the one I intended to. I don’t even cry at these appointments anymore. I’ve either become much better at handling all of this, or I’ve become hardened and immune to the cavalcade of bad news that seems to wait for me at Orthopaedic Clinic at the Ottawa Hospital.

I’m listening to “Where does the good go” by Tegan and Sara. Long before they sold out with “Everything is Awesome” and the Lego movie, they were an indie-folky Canadian band with beautiful harmonies. I’ve been asking myself where does the good go? How many more times can I go through surgery and keep my chin up? At least one more, I guess.

4 surgeries - 1 year

In 47 days I'll be going for my fourth surgery in one year and my seventh in six years. How the hell did I get here?

Surgery #1 - 2009 - total shoulder replacement, left, resounding success
Surgery #2 - 2011 - humeral head replacement, right, success
Surgery #3 - 2013 - glenoid bone graft with crushed cadaver bone, right, failure
Surgery #4 - 2014 - glenoid bone autograft and humeral head re-replacement, right, success
Surgery #5 - 2015 - screw removal from surgery #4, right,  partial success, infection discovered
Surgery #6 - 2015 - removal of all hardware and insertion of cement bone spacer, right, success
Surgery #7 - 2015 - removal of bone spacer and reinsert hardware, right, TBD, scheduled for October

No wonder I'm so angry. April was an utter shit show of a month. I had minor, arthroscopic surgery in late March, found out I had an infection from my October surgery in April, went on IV antibiotics and had a central line inserted (which is a much bigger, life-encompassing deal than the small words "IV antibiotics" and "central line" lead you to believe), had an allergic reaction to said antibiotics on and around my 40th birthday, landed in emerg, went on more IV antibiotics for 6 weeks, had a major surgery, and then recovered. Oh, and I've been flaring on and off. It's nice the root cause of my surgeries - RA - continues to rear it's ugly head just in case I tried to forget why I'm going through this hell in the first place.

I've not written about this yet. I've put myself on emotional autopilot to ensure that I don't really think about it, motivated by self-preservation I assume. It wasn't until I wrote this post and listed all my surgeries did I realize that I'm going on surgery #7. I thought it was #6. I guess somewhere past #5 I stopped keeping track.

I've managed through the past couple months one step at a time. That's all I can handle. With the final surgery looming in October, and summer on its way out, I don't think I can dodge the inevitable any longer. My countdown app tells me 47 more days until I'm in for surgery and I feel my veneer of happiness slipping away in the time it's taking to write this post.

I referenced the movie "Cake" in my last post and the movie (and music) have stayed with me. It's the closest representation of my RA journey I've seen so far on the big screen. The song played during the credits was an acoustic cover of Beyoncé's song "Halo". I can't seem to find anything positive from my past six months, but this song reminds me to try.

It just really, really sucks

Given my track record of not posting when the going gets bad, not posting since February would therefore indicate some pretty terrible months recently. That would be an accurate deduction. I don't even know where to start, so we'll start with today and work backwards.

Today I had a shoulder biopsy. It was the third one of my RA/shoulder surgery career. It hurts. It is my most dreaded procedure. It is emotionally and physically draining. It involves sticking six needles in your shoulder joint to obtain cell samples to ensure there is no infection prior to surgery. A necessary evil. The reality looks more like me lying in a radiology suite sobbing for 45 minutes, using all my yoga training and deep breathing to keep as calm as possible and barely succeeding. 

Biopsy day came hot on the heels of a rheumatology appointment yesterday where I was injected - for the first time - with cortisone via IM. That was new. Usually my cortisone comes in the form of joint injections or oral tablets. My joints overall are quite poor right now, and I needed a boost. I'm off my fancy arthritis drugs given the frequency at which I seem to be returning to the OR for shoulder surgery. The drugs interfere with my ability to heal, which is incompatible with surgery. Yesterday I got jacked up on 'roids. For real. I should be feeling physically better in the next day or so, but the emotional side is taking longer to work through the "why" of these procedures. 

I'm having a hard time reconciling the events since March 29th, and I haven't really tried all that hard.  Writing this blog entry is the first time I've tried to encapsulate what's happened. And I'm failing miserably. I don't know how to say in different words, the separateness that my RA creates in my life. I don't get to escape this. It's etched into my shoulder everytime I look in the mirror, it's etched into my hands in their deformity, and in my face as I cringe in pain. Every. Single. Day. 

I'm tired. I'm just so utterly, gut wrenchingly exhausted of having RA. Especially these past months. So tired it hurts. So tired I just want to pretend it's not happening. I just don't have any more emotional or physical energy to spare to write, speak or think about it. I'd love to go a day where I'm not sick. Where I don't have to take any meds, where I don't have to worry about what I can or cannot do in case I run out of enegery. A day where I don't have any pain. At all. For just 1 day. That is so unimaginable, like winning the lottery. People have dreams of all kinds - money, fame, happiness. All I want is a pain and RA-free day. 

In the midst of these medical appointments and RA-emotional meltdown, I watched the movie "Cake"- a gritty look about a women dealing with chronic pain. That hit pretty close to home. The trailer uses Hearts' song "Hemiplegia" which speaks to me of fighting a battle you might not win, and might never end. Very much mirroring my fight with RA.

Living the life you want

I mark my past decade by babies and surgeries. In 2005 and 2007 my children were born, ironically via a surgical c-section. In 2009, I had a total shoulder replacement on my left side. In 2011, I had half of my right shoulder replaced. In 2013, I had the other half replaced, it failed. In 2014 I had the whole right shoulder replaced. In 2015, I’ll have orthoscopic surgery to remove a protruding screw on my right side. This is how I have marked my time in my 30s.

I think something clicked into place in 2013, after I found out I needed more surgery. I realized that I am not going to get “better”, that if 22 years of drugs, needles and surgeries hadn’t provided any form of remission for my RA, it was unlikely to occur in the future. This doesn’t mean I’m not trying to get better, but my expectations for my outcome have been reduced significantly. Lower expectations provide for less disappointment in the end. At times, I’ve been pleasantly surprised by what I’ve been able to do pain-free on occasion. Life is too short not to actually live – or at least try.

There is a sense of relief that comes with accepting what is. I’ve entered into a more zen-like state in my attitude towards my RA. I rage and rail against it on my blog, and to a select few people in my life, but for the most part I’ve become somewhat immune to the highs and lows that come with having a chronic condition. I am less and less shocked by the events of my life as they pertain to my health.

I’ve started to carve out the life I want. I want to travel. I want to drink as many interesting beers as I can. Ditto for scotch. I want to see as much live music as I can. I want a meaningful and progressive career. I want to write. I want to be read. I want to show my kids the world. I want to go on more dates with my husband. I want to be happy. I want to lead a good life, a life I am proud of and a life with few regrets.

 

Much of my effort has stemmed from the fact that if I don’t create these memories, “carpe diem” or embrace a “yolo” attitude now, my best years will be behind me and so will my health, and I’ll be left without the memories in crippled body surrounded by piles of regrets. And I really don’t want that.

My daughter, Chelsea, and I went to see Katy Perry last year when she came to Ottawa. Chels was 7 at the time, and this was her first concert.  We dressed in Katy-style pink and purple wigs and sang our hearts out to all our favourite song. It was Chelsea and I creating a memory together.  I want to create as many of those memories as I can.

 

The show capped off with fireworks and her signature song “Firework”. A happy song for a happy post.

Arthritis by the Numbers

I'm flaring. Again. This is the fourth flare requiring prednisone (aka "Satan's Tic Tacs") in the past 12 months. Granted I've been off my fancy arthritis meds due to recent surgery for the past 4 months, but I'm a little fed up with how significantly my RA is inconveniencing the rest of my life. I'd like to work, I'd like to parent my children, I'd like to go on a date with my husband, I'd like to go out, I'd like to not be in pain, I'd like to not meter out my spoons like they were made of pure gold. I'd really like a ray of hope.

To put this in perspective, I have pulled some stats on my RA:

1 - The number of upcoming surgeries I have scheduled in the next 3 months
2 - The number of shoulder biopsies I've had to date
3- The number of shoulder surgeries on my right side alone alone,  in a 4 year period

4 - The number of shoulder surgeries I've had in 5 years

5 - I've had 5 surgeries in total related to my RA
24 - The number of years I’ve had RA.

30 - The number of times I’ve seen my orthopaedic surgeon in 5 ½ years.

Dozens - The number of x-rays I've had in my RA career.
100's - the number of needles I've had for various injections and withdrawals in and out of my body, including the ones I've given to myself.
1000's - the number of pills I've taken in the past 24 years.

My RA is a part of my life. It is happening, and – like many things in life – it’s how you manage through the obstacles that life throws at you that determine your character. Right now, don’t care about how character-building this might be. One could argue that I’ve built a lifetime of character throughout the past 24 years.

One of the best gems that I found was Tom Odell's "Another Love". All my tears have been used up, I don't know how to grieve for this disease any more.